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Oncotype test for Premenopausal and node positive women

11 REPLIES 11
CeliaRose
Member

Re: Oncotype test for Premenopausal and node positive women

Dear smclaire

Thanks again for your reply. That’s good to know about the 4 x EC and I’ll bear that in mind if I need the chemo.  You mentioned you had started the Tamoxifen. Did you stop that when you started the chemo? 

The hospital have now sent off my oncotype test to the US so fingers crossed it comes back low! I am having to self fund it at my hospital. 

Thanks again for your responses and it’s put my mind at ease that I’m doing the right thing. 
Regards

CeliaRose

smclaire
Member

Re: Oncotype test for Premenopausal and node positive women

Hi @pidge , i finished chemo mid Jan 2020 and started zoladex and tamoxifen straight after. I was changed to exemestane in July and started Bisphosphonates in November. I think the plan is for 5 years however I think I will ask to have my ovaries removed before then . I’ve not had a period since November 2019 so totally menopausal.

I do my own monthly zoladex so it’s not a problem but I don’t see the point in keeping my ovaries now really. In fact I would be worried about stopping zoladex and the hormones starting back up again! I feel as if Oestrogen is sadly my enemy now !!

smclaire
Member

Re: Oncotype test for Premenopausal and node positive women

Hi,  @CeliaRose , yes I only had the 4 EC no other chemo, I think she weighed up all the factors . I had multicentric disease   With 5 tumours but the largest was only 1.8cm and no node involvement hence the low predict score and stage 1 . Her plan was always for aggressive hormone therapy so although she couldn’t ignore the benefit of chemo (> 20% reduction in risk with chemo) she still balanced it with the potential risks of having it, hence only 4 high dose EC. I guess it’s all so individual and also open to interpretation by the experts we have to place our trust in . 
I was upset by the high score but I understand now it’s not just about the risk of recurrence but also about how effective chemo is to individual tumours so it’s only given to those who definitely benefit from it . 
Good luck with your decision making , if you are in the UK and there’s any doubt about chemo you should definitely be able to have the oncotype score done on the nhs xx

pidge
Member

Re: Oncotype test for Premenopausal and node positive women

Hi SMClaire,

Thank you for sharing. Very useful information.  
How long have you been on Zoladex and tamoxifen now? I noticed you mentioned your diagnosis came at 45. Did your oncologists say how long you’d have Zoladex?

 

Thanks

CeliaRose
Member

Re: Oncotype test for Premenopausal and node positive women

Dear smclaire

Thank you so much for your reply. I have explained below in previous reply to Joskyblue why I’m asking all these questions! 

However your score was a real surprise and just goes to show how beneficial the test is. I expect you were really surprised when you got the results but it’s good to know you’re getting all the treatment you need especially after a low Predict score. My predict score was 4% so borderline again and my Oncologist couldn’t say/didn’t know one way or another whether I would benefit from chemo or not so that’s why I’m self funding my Oncotype test. 

Your Oncologist sounds very good and following the research I’ve done it makes perfect sense about the oestrogen levels. I noticed she was woman. 😉

Can I ask one more question? Did you only have the 4 cycles of EC and no Docetaxil? I understand there’s different types of chemo and knowing what you were given prompts me to ask my oncologist more questions about that, should I need it.  

Hearing about your high score was a shock but it reinforces, I think, that I’m doing the right thing and getting the test. However I’d better prepare myself just in case it comes back high! 
Thanks again for your response. 

 

CeliaRose
Member

Re: Oncotype test for Premenopausal and node positive women

Dear Joskyblue

Thank you so much for your reply. I’m having to push for the Oncotype test and having to self fund it myself at my local hospital so I’m trying to get as much information as I can. I’m 51 so I’m borderline with regard to age but still having periods. After doing my research I understand the test is not so robust for premenopausal and node positive women but the US and some hospitals in the UK are putting these women forward for the test to avoid the gruelling chemo, that my not be beneficial to them. So your reply was very interesting and made sense with regard to your hospital lowering the score to 21.

Thanks again for your reply. 

smclaire
Member

Re: Oncotype test for Premenopausal and node positive women

Hi, I was pre menopausal when I was diagnosed at aged 45. My sentinel node was clear and my predict score showed no benefit for chemo but my oncologist organised the onco type score, feeling it would come back low she already started me on tamoxifen. It came back at 32 so a definite benefit in having chemo. I had 4 cycles of EC every 3 weeks . She was surprised by the score but still felt my biggest benefit in terms of treatment would be to hammer my oestrogen levels. So I am having zoladex injections and I’ve now changed from tamoxifen to Exemestane. I’d say it’s definitely worth doing the oncotype test , it adds that bit of extra info to your treatment plan , good luck xx

Joskyblue
Member

Re: Oncotype test for Premenopausal and node positive women

Hi, I am 49 now, 48 when I was diagnosed. I was still having periods then, although I haven't had one for a few months now- I think that's because of the tamoxifen 😉. My understanding was that if youre under 50 the oncoptype numbers come in a bit lower than for over 50s but I might have got that bit wrong.  

CeliaRose
Member

Re: Oncotype test for Premenopausal and node positive women

Hi Joskyblue

Thank you so much for your reply.

I was interested to hear your Oncologist said with a score of 21 there was a small benefit. I though it had to be over 25?  Do you mind if I ask are you still having periods, ie pre menopausal? I understand that can make a difference. 

Thanks again. 
CeliaRose

Joskyblue
Member

Re: Oncotype test for Premenopausal and node positive women

Hi CeliaRose.

My oncoptype test was 19 and the oncologist told me there was no benefit in chemo. Had the number been 21 there would have been a small benefit, so it was close! I had micromets in 1 node. Hope this of some help and wishing you lots of luck.

 

ZoeK_BCN
Community Manager

Re: Oncotype test for Premenopausal and node positive women

Hi CeliaRose,

Thank you for your post.

I am sorry you haven't had any response yet. I am hoping my response will help our members to see your post and share their experience.

In the meantime, for any clinical questions, please remember that our breast care nurses are here and happy to talk things through.

Sending you our best wishes,

Zoe

CeliaRose
Member

Oncotype test for Premenopausal and node positive women

Are any of you ladies premenopausal and lymph node positive and had the Oncotype test?

I'm interesting in taking the test as my benefits of having chemo are borderline and unclear, but my Oncologist said the results are not so reliable for a node positive and premenopausal woman.

If you are premenopausal and are lymph node positive (probably only 1 or 2 nodes), would you mind sharing your score results and if you went on to have chemo please?